What is coeliac disease?

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Coeliac disease is a condition in which you cannot tolerate gluten. Gluten is a collective term for proteins found in the grains wheat, rye and barley. Coeliac disease, sometimes also called gluten intolerance, is an autoimmune disease. This means the immune system attacks the body’s own healthy cells. In coeliac disease, the cells in the lining of the small intestine are damaged when you consume gluten. The lining becomes inflamed, and the intestinal villi are damaged and break down. This makes it increasingly difficult for the body to absorb important nutrients from food. This can lead to nutrient deficiencies and other, sometimes serious, problems and complications. Coeliac disease is effectively treated with a gluten-free diet.

Coeliac disease is a chronic condition, which means it does not go away over time. This is because the immune system has a memory. Coeliac disease therefore cannot be cured today. However, the only “medicine” for coeliac disease is relatively uncomplicated and very effective: following a gluten-free diet. It is important that everyone with coeliac disease is diagnosed, because a gluten-free diet is a lifelong treatment and, without it, coeliac disease can lead to nutrient deficiencies. The diagnosis must be made within the healthcare system, and you cannot determine on your own whether you have coeliac disease. It is also important not to exclude gluten yourself before the investigation is complete, as this can make it impossible to confirm or rule out coeliac disease.

Celiac disease is now much more common than it used to be. Over the past decades, the disease has gone from being considered something unusual that only affected children to being a widespread public health problem in people of all ages. Awareness of the disease has also increased, both within healthcare and in society. At the same time, the tools for diagnosing celiac disease have steadily improved. Despite this, celiac disease is still unfortunately often missed.

Most screening studies suggest that celiac disease is present in about one percent of the population across the Western world, and one to three percent in Sweden. However, most people with celiac disease still remain undiagnosed. This is because far from everyone has—or feels they have—the classic gastrointestinal symptoms most often associated with celiac disease. Some instead have completely different symptoms, and some believe they have no symptoms at all.

No one is born with celiac disease; the disease develops only after the immune system has learned to react incorrectly to the protein gluten. Why it learns to react incorrectly is being researched worldwide. It is known that both certain gene types (celiac risk genes) and the presence of gluten in the diet are required. A third factor is the “trigger” needed to set the disease in motion. Only a small fraction of people with the genetic risk develop celiac disease. In Sweden, about half of the population has the genetic predisposition, but only about 2–6 percent of them develop celiac disease. This third factor—the trigger—is usually described as one or more environmental and lifestyle factors. Research is looking, among other things, at the influence of viruses, bacteria, infections (especially during the first years of life), the gut microbiome, and infant foods.